At SUDEP Action, we believe that bereaved families and friends can play a very important role in driving change. For some people, being active in an organisation is helpful, whereas for others, it can add to distress. Because we have extensive experience of working with the recently bereaved, we can advise on how best to get involved.
It’s also important to remember that an epilepsy-related death can affect the wider community too. Sometimes, people feel an overwhelming need to do something to show support for a family that has lost a loved one. There are all kinds of ways in which people can participate and work to raise awareness in the wider world:
- reporting a death to the Epilepsy Deaths Register
- becoming an ambassador
- sharing a story
For further information: